Hello, I am new here. I was diagnosed 10 years ago with rrms. My first issue was losing the ability to walk and having to re learn which took time but a full recovery! Last week I had a huge stressful week and ended up back in the hospital re learning to walk. Has any one else had times like this? I am on Tysabri for 7 years my ex talked me into switching meds. Has any one else had long gaps of no issues then one stressful week and everything changed?
Hi, i have had ms for 20 plus years but only diagnosed last year. My relapses were really well spaced out and different each time which was why they eren’t linked and so not diagnosed
Not too bad then? For the second time in physio and relearning the walking game its really frustrating. I’m glad it only took them 6 months to diagnose me. This is the second time since I was 14 I haven’t worked lol. Frustrating with a hefty mortgage too lol.
I am very glad that you are on Tysabri. Your MS definitely sounds as though it needs the heavy guns to keep it at bay. I’ve been on Tysabri 10 years myself and had a host of relapses and incompletse recoveries affecting all sorts of things, mobility included, but never completely knocked off my feet like you. We will never know how much bad trouble Tysabri has headed off for both of us in recent years, but I’m glad it’s part of our armoury. I wish you a good recovery.
Alison
If ny neuro decides to put me back on it wheni get out of the hospital. I wish my ms was like most people who cam go years with no walking issues lol. Someone once said to me that women are more apt to get ms but men get it worse lol.
Can i just ask - you said that your ex talked you into changing meds and talk about being put back on Tysabri. Were you taken off it at some point? if so, the relapse could have been caused by the rebound effect
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My ms nurse said it would probably be caused by not being on the dmt and then the Ms probably kicked back in as if I was never on tysabri. They are going to regulate my issues now and start heavy physio and the figure out if I want to go back on tysabri or switch. I like tysabri but I do not know other dmt meds work as well as what tysabri did for me. Has anyone else has issues with tysabri?
Now I will never listen to anyone about my mess again ugh not worth it. The bank is loving my missing mortgage money after this set back ugh. Lol
I misunderstood - I thought you had been on Tysabri for years, having been persuaded to take it by your ex. So I thought your ex had given you good advice, not bad advice. I’m sorry for my misunderstanding and more sorry for your situation. That’s really tough, but it’s water under the bridge now. I hope you can get back on an effective DMD as soon as possible.
Alison
My highly active RRMS starts to break through pretty fast if I extend the Tysabri dosing regime to 6 weeks. Lesson learned for me. I just dare not let MS see a chink in my armour, simple as that. Sounds like you’re the same. DMDs only work when you’re taking them.
Alison
Thank you me to, I’m tired of not working and avoiding calls from the bank lol. I want my normal life back again. Not working because of covid and now this ms relapse is making me really stir crazy. Have you had that during an ms flare and your not working and just so bored un able to think what to do to pass my time. On the plus side I have a great physio team. Made me walk with a walker for 50 feet which made me sweat lol oh well I learned my last flare working hard during physio does help alot.
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If and when I go back on tysabri I will never extend it. Find that dmd is a wonderful thing. I have been on it for years and I’m still jcv negative. Have you heard much about ocrevus or lemtrada?
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I know little about them beyond the general understanding that they are very effective as well.
You could try about walking when you’re getting bored. Apparently thinking about exercise can actually strengthen your muscles, at least for normal people. Maybe too for those with MS, maybe it helps rebuild your neural connections.
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Ok good because if that’s true I have been walking for miles being stuck in the hospital. I’ve been more itching to get home and go for a walk on my farm and go for a drive into town on my tractor to entertain my time.